As soon as I received my brain mets diagnosis, I immediately thought I was going to die very soon. I had total brain radiation which has worked very well and the recent scans show some tumours have disappeared and the others are half the size.
But I know that they are likely to reactivate at some stage but is this definate? how long could it be?
I also have lung mets which I think the dr is more worried about. I won’t ask for a prognosis as I believe that it doesn’t exist. No one knows what will happen with me and my treatment.
BUT … I know that I am very ill and probably at the end of my life - maybe 1 to 2 years if I’m lucky - is this realistic? as if it is, I should start preparing for it but my friends say that I shouldn’t think like that as who knows what could happen???
are brain mets more serious, harder to get rid of, worse prognosis???
I’m feeling very confused and I’m not even sure if this post makes sense??
Hannah - Your post makes perfect sense, i’m so sorry i don’t have a clue as to the answers but i really hope other ladies do and let you know asap. You obviously have a strong need to know some answers and i admire your integrity in the way you’ve posted. Hugs to you.
just wanted to post to pass on my support to you, i don’t know the answers but your post did make sense to me and i am sure someone will be able to give you a clearer picture soon, hope this bumps the thread to let someone who knows see it.
I’m so sorry but I don’t have the answer for you either - though I’m sure that someone will be along very soon who does know. I just wanted to add that what you say makes perfect sense me too, and I know I would want lots of questions answered. Can you ask your BCN to make an appointment for you to speak with your oncologist sooner rather than later?
Just wanted to pass on my love to you and your gorgeous little family. You are always in my thoughts and prayers.
As you know all secondaries are serious and I can understand how you feel. I have a friend who had whole brain radiation 2 years ago(she also has lung mets). At the moment is doing well although she has been on chemo this year for the lung mets, she’s on a chemo break at the moment and enjoying life.
When I was first diagnosed with secondaries, I didnt think I had long to live. My GP said I could be dead in a year although she said she has had some women do really really well and they have lived 7 years! When she said that I decided to retire! I did a lot of thinking/planning for death. One day I decided I was spending too much time thinking about death and not enough living and enjoying what time I’ve got. Our lives even if we live to old age are very short.
I understand why you don’t ask for a prognosis because as you say they just don’t know, none of us do. Treatments are improving all the time so any data we see or find is out of date.
My consultant said to me that he has seen people die who should not of died and people live who should have died. He said we really don’t know.
We are all going to die but knowing we are is so hard to live with. Post me any time you want to chat-I hope my post makes sense, I’m rabbling
Hi Hannah
I have followed your posts on the Brain Mets thread and think that it’s great you are doing so well. I think all of us with mets (as SueC said) know that we have a shortened life span - putting it diplomatically! We also see such different circumstances on these forums so, again, we are all different. Without wanting to appear negative I have seen (on here) that ladies with brain mets do not have such a good prognosis as, say bone mets, but that is only my observation. Treatments are changing all the time and I think it was only a few years ago that the treatment you have had didn’t even exist, before then I guess there was no hope. I have bone mets and although I am doing well at the moment I know that can change at any time - BC is a bl**dy fickle disease! I therefore live every day to the full, I don’t have any regrets and I want to have wonderful memories of everything that I have done since my secondary dx - for myself and for my family to remember. As I think your children are younger than mine you may want to do something different on the ‘memories’ side of things? There have been several threads on this before and heartwrenching though it must be I think some of the ladies have found comfort in doing something. Having said that I hope, if you do start something off, you keep adding to it for years and years
Take care, we are all scared of our prognosis, so try not to live for that but live for the moment.
Nicky xx
Hi Hannah,
I don’t know the answer to your question although I did have a single brain met removed last year. I was diagnosed with liver and lung mets at the same time and it was the liver mets that the onc was really in a hurry to treat with chemo. I didn’t ask about my specific prognosis and in fact see two different oncologists, one for the brain- just routine MRIs every 3 months at the moment, and the other for everything else. My understanding is that some chemo does not cross the blood brain barrier so can be more difficult to treat as there will be less options. I am currently taking the antihormonal Letrazole (femara) which does cross the blood brain barrier and after a year there has been no recurrance of brain mets and my liver and lung mets have shrunk. I don’t know which will kill me eventually but if I’m really really honest the brain met is the one that scares me the most but I try not to think about it too much!!
I agree with what Sue says. you can spend so much time worrying about dying that you forget to enjoy every moment that you have. I know that is easier said than done and I don’t manage to do it everyday but I do try.
Take care
Louise
Its fantastic that Femara is working so well for you. Are you very strongly oestrogen positive? I am staring Femara soon for bone mets - I was told yesterday I can have my summer holiday first - but I am 6/8 e+ve, so wondered whether it’s only the 8/8 ladies that get the really good results.
I was diagnosed with brain mets in March 2008 and had surgery, gamma knife and chemotherapy. i had gamma knife a second time and WBR in Jan this year. I was shocked this year when the neuro consultant said thast most people only live one year with brain mets.
My recent scans were not good and the cancer is progressing in the brain. My onc was asking when I want to stop treatment and I really didn’t know I was at that point yet. I have changed chemotherapy and will have a scan after 2 or 3 cycles. Thankfully I have no symptoms and hope that continues.
I think the thing about brain mets is that only a few chemotherapies cross the blood brain barrier and we can only have WBR once. My tumours are now the wrong shape for any more gamma knife sadly.
As others have said everyone is different and some will have a better response to treatment than others. I also have liver mets but I think they are the least of my worries just now.
Hello Gemini
I just wanted to send love and support. You must be in a very strange and lonely place right now. Please remember that you have friends here and lots of folk will want to support you
take good care
monica xxx
Hi all,
Gemini, I’m sorry that things are progressing, at least if you are free from symptoms, you are able to enjoy time with friends and family.
Finty, My tumours are moderately positive. Its been working for 10 months so far and my onc says 1-2 years is usual.
enjoy the summer hols
Louise
Hi,
I was diagnosed with 3 inoperable brain mets in February 2008 and had friends and relatives rushing to my bedside as I wasn’t expected to make it out of hospital. After major steroids & WBR I was allowed home and a few weeks later I asked my onc if my cancer was now ‘terminal’, to which he said “Yes”. But I’m still here nearly 2 and a half years later and I’m surprisingly well, getting by on just herceptin.
Surviving cancer seems to be just as much of a lottery as getting it. I know that it’s very likely that the brain mets will get me sooner or later, but I’ve already lived a lot longer than I was supposed to. and I’ve no intention of giving in without a fight.
Best of luck to everyone out there fighting the same battle.
Love, Lynn
Hi I have not been on the forum for quite a while, but it is good to know it is there at our dark and not so dark moments . I have just been diagnosed with brain mets and am waiting to see about wbr on Thursday ( I also have liver and lung mets) This one is frightening me and do not want to think I only have a year to live as suggested on one of the posts. Would love to hear from those who have survived longer than a year and other positive news
Can anyone offer me any suggestions re treatment, side effects management and did they take steroids ?
At the moment I feel like a grow bag but sadly no tomatoes only more cancer !
Hi ruffyp
Sorry to hear about your new mets. It must be very frightening. I had a single brain met diagnosed June 2009 so have certainly survivied a year+. My met was surgically removed and then I had chemo for liver mets. Unfortunately the chemo does not cross the blood brain barrier but since chemo have been on letrazole (femara) which does. I have not had a brain met recurrence so far although I live infear of it. I had my routine MRI 2 weeks ago and will get results on Monday so fingers crossed.
Hope all goes well
Louise
Hi Hannah,
I know just how frightening having brain mets can be, but I would just like to tell you about a wonderful friend of mine.She had BC eight years ago, and was diagnosed with brain mets five years ago. She was very ill, and noone expexted her to survive, esp as after chemo, she then had a brain anurism!! This week she informed us that in June, she was declared to be in remission!! Five years!! I know her story is rare, but it does happen, and I wish for all you girls the same.
With my very best wishes,
Jax
Jax - what an inspirational story. I don’t have secondaries myself and was treated for primary a year ago, but my niece was dx with liver, bone and lung mets a year ago and with brain mets around 8 weeks ago. She sailed through WBR but her liver results are not great at the moment. She has to wait and see what happens with the brain mets. I think that stories about people surviving for two + years are very encouraging. Thanks for sharing.
I was dx with a brain met in May 2009 and had surgery fol by whole brain radiotherapy. I am now on Letrozole, I was terrified at the time to say the least. I never ask about prognosis as to me BC is fickle. I have also had a lung tumour removed and a tiny bit of spread in one leg. I am still here and feel so much calmer about it all now. I decided to post to you as when I was dx I felt like I was the only one and couldn’t find anyone else on this site in a similar situation. I too have children and I think you really need a lot of recovery time. I hope this helps. XXXXX
